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Conception

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Endometriosis and TTC

9 replies

Laurenemma13 · 27/05/2020 11:36

Hi all,

I'm undergoing tests atm however doctors have told me that they think I may have endometriosis. My husband and I want to start TTC in the next month or two when I go back to work from furlough and have been encouraged to do this as some of my symptoms may ease up.
Over the past few months, I've started bleeding after sex also. I'm devastated as I had hoped this was just a polyp. Now I dont know if this will ever disappear and have been in tears and everything as I just felt as if the pain, PMS and bleeding for 21 days solid wasnt enough, it's taken away that as well as I'm always so apprehensive now.
Has anyone fallen pregnant with these symptoms and they have disappeared while they were pregnant? This is really new to me just now.

Sorry for the TMI x

OP posts:
flashbac · 27/05/2020 11:42

Can you have surgery to remove any lesions? Have you had a lap?

Pinkstars2501 · 27/05/2020 12:21

Hey, sorry you're having a bad time.

I have endo, stage 3. I was diagnosed by laparoscopic surgery last year after being fobbed off for over a decade. A Lap is the only way to diagnose I'm afraid, so push for it.
We have ttc for years, no luck, even through IVF. But everyone is different and lots of people with Endo still manage to have babies so I still have hope.

The thing with Endo is that the stage of disease doesn't tend to correlate with the pain. You can have very few patches but be in horrendous pain, or little pain but lots of Endo. Excision by a specialist is the only way to get rid of it, but it'll likely come back eventually.

Also, it's not what you want to hear, but there is no cure. Surgery, pregnancy, hysterectomy- none of these cure it. Hysterectomy will help with adenomyosis, because that's inside the womb, Endo is outside. They may ease symptoms for a while, but they won't cure it. So many people are told that having a baby will cure it, it won't. I don't mean to be a downer or to scare you, but I got so sick of people saying "relax, it'll happen when it happens" that I always feel that it's important for those living through it, to be honest about their stories so that people take it seriously.
My Endo pain only really flares when I'm on my period and my management is codeine/paracetamol/ibuprofen and a hot water bottle.

If you're on Instagram or Facebook there's lots of groups and people to follow that share pain management tips etc so I follow lots of them. It's a cruel disease that needs a lot more awareness and funding.

Do push for a lap though, at least you'll have answers.

Laurenemma13 · 27/05/2020 13:11

Thanks for coming back to me. At the moment they aren't 100% but with the symptoms inhale 3 doctors have noted they think that's what it could be. I've had an ultrasound which ruled out PCOS and they said thankfully all my ovaries are very healthy and I've been referred for a hysteroscopy and laparoscopy but just waiting until things resume to normal for my date to come through for these. The scan did show my womb was very thick so they have said potentially a polyp in there but I was in a lot of pain during it also.
In the meantime they have said to TTC anyway as it may relieve some symptoms. Even when I'm not on my period I still get pain and cramping.
It's just very overwhelming as now I'm also bleeding after sex and it just feels like its taking over my whole life atm with no let up and just getting worse. And they cant put me on the pill to treat it due to TTC on the next month or so x

OP posts:
Pinkstars2501 · 27/05/2020 13:36

Yeh it's shite. Even though I was actively ttc, they still tried to get me to have a coil right up until I was being prepped for my lap.. it's a joke really.

It's so hard because every woman's symptoms are different in the way that they manifest, so I guess it's hard for doctors to know how to treat.
That's not really good enough for me though....

I hope you get some answers soon, it's hell. The mental torture is worse than the physical pain.

RedRed9 · 27/05/2020 13:40

In the meantime they have said to TTC anyway as it may relieve some symptoms.

It worries me that they said this to you - can you expand on what they meant?

Laurenemma13 · 27/05/2020 14:31

At the moment I have irregular bleeding. A lot of the symptoms I have like irregular bleeding are often eased during pregnancy. As I want to start a family I spoke with my GP and gynaecologist who said there is no harm in TTC atm. They have already ruled out some things also.

OP posts:
RedRed9 · 27/05/2020 17:48

I agree that there’s no harm in TTC right now but I would be really really cautious about anyone suggesting that getting pregnant will ease your endo symptoms. Some women’s endo symptoms are much worse after pregnancy. I’ll DM you.

Laurenemma13 · 27/05/2020 23:08

Tha is so much for your message. I should have been a bit clearer sorry that I had asked the doctor this and they sought a second opinion from my gynaecologist. It wasnt recommended as a treatment but as they knew I was looking to start a family had said there would be no harm in trying and it may help with some symptoms Smile

OP posts:
HelloViroids · 27/05/2020 23:12

Just in case it makes you feel better, I have hideous endo, was told I could never conceive naturally, and while we were saving for IVF I got pregnant! Now almost 31 weeks and so far my symptoms have been much better during the pregnancy - I don’t know what will happen after because this is just from the active pregnancy hormones, but trying to take things one day at a time Smile

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